Monday, August 21, 2017

School Daze

Two weeks left until school starts. I'm waiting with baited breath... It's not just my kids that thrive on routine!!

Little Man will be in school full time. We haven't started the fight yet, but I am already predicting a tough year for him/us. His behavior has gotten really intense this summer. I use "intense" because he's not "bad", it's not a purposeful choice. He's just frustrated all the time and overreacts at the drop of a hat, and it manifests as huge blow-out tantrums for hours on hours. His hitting has gotten bad enough that he's managed to bruise himself a few times and now he's starting to lash out at his brothers if they get in his way. So once school is back in session I plan to call for an IEP to request not only the PT that they've taken away and he desperately needs again, but a behavioral therapist/ABA as well. If necessary, I want him bussed to a school that can provide more intensive help. It's been awhile since I've been this worried about him, and I think he's at a pretty critical point where if we don't get him help soon, he will fall into really bad patterns that I won't be able to break.

Vegas will be on a weird school schedule. 3 days a week of full day private school, 2 days a week of half-days at public school. He qualified for public school five days a week, but we decided he needed to stay his private school where he has made such huge improvements and is so comfortable. He's basically going to the local school for speech therapy and for specials like music and PE. He also got a waiver to go to the same school as Little Man, so they will ride the bus together two days a week! I'm probably going to explode from cute that first day.

And Cheeseball and I are staying home full time. Lots of quality one on one bonding and we're probably going to sign up for Mommy and Me gymnastics and swimming lessons. Cheeseball has so much energy and is very different developmentally than Vegas was at 2 years old. I think he'll really love the attention and the classes, he loves being a big kid and exploring so it will be right up his alley.

My favorite part of school starting again is that I plan to get more serious about taking care of my physical and mental health. More writing, more exercising, more meal-planning and cleaning (which actually is not work for me, I love it and it keeps my emotions more level). An organized home and healthy body is my ultimate dream. To get that started I signed up for a meal kit delivery service and some online subscriptions to keep the diapers and milk coming regularly. Plus I even splurged for a couple fun phone apps for exercise plans and good music. 

Just two more weeks. TWO WEEKS! For now... I have to go figure out how to lock the blinds to prevent the kids from looking directly into the sun.

Tuesday, August 1, 2017

I Know You're A Neurologist... But... HELP!

Last Wednesday Little Man finally had his follow up with his neurologist. We'd had to cancel the last one because Hubs went out of town for work and I was flying solo with the boys and no sitters, so we'd been waiting since mid March for this appointment.

The logistics of getting up to Hopkins is always a nightmare for us because we live so far away. It ends up being four hours round trip, not including the stop at the end for a Costco run. And as tedious as the drive is it really isn't the worst part. The worst part is getting Little Man to walk through the massive hospital when he won't keep his shoes on, has to stop and lean on you every few moments for a rest, and needs constant redirection to keep moving at his snail's pace. And if you've ever experienced a toddler cling, a giant nine-year-old cling is ten times as heavy and just as frustrating.

So I opted to bring the beach wagon, as a way to hopefully bypass the taking off the shoes and slow walking around. Definitely wasn't ideal, definitely wrenched my back dragging 65 pounds of stroller and kid. But it was better than not using anything. More on that later.

We met with neurology for his med check and all things brain. His doctor upped his medication levels despite no seizures recently because Little Man had a pretty big weight jump from the hospital stay. He also thinks that we will probably continue with the medication for at least two more years, if not for his lifetime. The risk of seizures with Little Man is now just too great. With his foot and muscle issues on my mind however, we ended up talking mostly about what our next steps were and if we could use Hopkins as our point of contact.

The neurologist was amazingly patient and walked me through way more than he is obligated to... and when he didn't have an answer he took the time to ask his boss to figure out more ideas. I freaking love residents. I've had plenty of bad experience with doctors, but residents rarely let me down.

So about that foot... we have to call our insurance company, find a specialty pharmacy that will ship the Botox to my house, and then I have to bring the Botox to a doctor who specializes in physical rehab. That doctor will do the injections, which should loosen the muscles enough to get an AFO or cast on the Little Man. Botox only lasts for 6-8 weeks, so we're probably looking at more than one set of injections, which is a four hour round trip to the doctor's each time. What a nightmare! But all of the doctors agree, Little Man is slowly losing the ability to walk, so it's a non-negotiable.

We also are getting a prescription for more physical therapy and a transport chair (aka, stroller for big kids) to help us cart Little Man around without using the wagon. PT is of course at Krieger in Baltimore again, so we're looking into a class I can take as a caregiver to be able to do the stretches and exercises at home. Hopefully I could learn a few exercises and talk about them with his school therapist as well, since they've backed off so much of the physical therapy in his IEP.

We've barely scratched the surface of what comes next for Little Man and I'm already an anxious, hive-covered mess. For someone who hates talking to people on the phone and who has major panic attacks doing highway drives, so far this is making the next few weeks look hellish.